Brain Cancer

Last January I wrote several posts about my husband’s brain cancer. Things seemed to be going well enough.

Unfortunately, in late March, his MRI showed some re-growth. He was, statistically, pretty much average for the number of months one with Glioblastoma undergoing the Optune treatment lives without a recurrence.

So we sought out a very experienced surgeon in Oklahoma City to discuss surgery. Dr. Michael Sughrue is a neurosurgeon experienced with Awake Brain Surgery. He and his team of physical and speech therapists were able to assess his speech and hand activity during surgery in order to minimize the effects of surgery on those brain functions.

I imagine I will post more about our experiences during this time in the future, but that is not the purpose of this post.

18:18

This post is to record that my husband’s incision from that second brain surgery became infected about two weeks post-op. So if you are reading this and wondering how he is doing, I am sorry to report that his body could not fight that infection. He was declared brain dead at 18:18 on April 20. I intended to go into more detail about this experience in this post, but I find that I am not quite ready.

I moved about a month ago in order to be closer to my parents, closer to my kids’ schools and to give each kid their own room. To give us a bit more breathing room as we grieve. To give us a bit of space from the memories at our old house.

Every day when I walked through the front door of the old house, I remembered coming home and seeing him throwing up on the front porch the day before he died. Part of my mind started to drift to the ambulance ride and the ED visit. The stay in ICU. I just can’t dwell there every single day.

Work and Workouts

Next week, I am reducing my hours at work again. I will be taking some time to unpack at the new house. Taking some time to get my paperwork caught up and filed away.

I am also moving my workouts from the evening time to the day time. My 3 year old has developed some anxiety when I leave the house at night.

“Are you leaving, Mommy?” he asks me every night now. So now I can start to reassure him that, no, I am not leaving tonight. I have to keep working out though. It is kind of a mental health thing. The endorphins really help me keep from feeling down. So now I’ll just workout during the day.

I’ll take more naps. and when I’ve got that routine in place, I’ll start writing more blog posts. I have grand ambitions of creating a following here. Creating some opportunities here. My day job doesn’t quite fulfill me the way that it used to. So we’ll see what blogging does for me.

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Amanda is the founder of Survival With Kids. She is the mother of 4 kids (two boys and two girls). She became a brain cancer widow in April of 2017 at the age of 32. She writes about surviving and preparing for unexpected events.

When you or a loved one is diagnosed with brain cancer, especially an aggressive one like Glioblastoma, one of the first questions that run through your mind is about glioblastoma life expectancy.

Given that my husband, Kraston, was a strong, otherwise healthy, young 33 year old man when he was diagnosed, his doctors did not give us a ‘prognosis’ or life expectancy. So being the curious researcher that I am, I set out to review all of the statistics available to determine what we should expect.

Life Expectancy Without Treatment

Without treatment of any kind, the typical glioblastoma life expectancy is generally accepted to be around 3 months. This is generally for people who have inoperable tumors and are too sick to undergo radiation or chemo. Luckily, Kraston’s tumor was operable and he was healthy and strong enough that he had few side effects from radiation or chemo.

Life Expectancy with Treatment

Life expectancy with for a cancer patient seems to be defined as “median survival time since diagnosis”, or the amount of time that 50% of patients survive after diagnosis. Median survival time is usually measured in months for glioblastoma.

Another way many resources measure life expectancy is as a percentage of people who live to an indicated number of years.

The number of months of survival time varies somewhat depending on how old the data is. Many websites still state a life expectancy of 12-15 months, but median survival time seems to have improved over the last ten years.

Data From American Brain Tumor Association

Glioblastoma Life Expectancy

It has been 8 months today since Kraston was diagnosed. As noted above, he hasn’t been given any specific prognosis. He had a stable (unchanged) MRI last week and is currently feeling good. So we will keep trucking along until something changes.

Statistically 99% of glioblastoma patients have a recurrence (aka progression, aka starts growing again and causing symptoms). I’ll probably do an analysis of the statistics for “progression free” time soon, but initial information from the indicates an average of 7 months progression free time since completion of radiation.

We are coming up on 6 months since radiation, so my prayer is that his tumor will wait as long as possible before it starts to grow again.

Amanda is the founder of Survival With Kids. She is the mother of 4 kids (two boys and two girls). She became a brain cancer widow in April of 2017 at the age of 32. She writes about surviving and preparing for unexpected events.

As the wife of a Glioblastoma survivor of only 8 months (so far), I am curious how this disease affects people’s lives. Since Survival With Kids is slowly morphing into a blog about Glioblastoma (at least for now), I thought I would research other blogs written by Glioblastoma survivors and/or their spouses.

Below is my compilation of both the active and inactive blogs that I have found so far. If you know of any others, please leave me a comment with a link to their blog and I will add them to this list.

Active Glioblastoma Survivor Blogs

These are active / websites blogs. The person with Glioblastoma is still alive and either they or their spouse are providing updates on a regular basis.

Jennifer Parry

Inactive Glioblastoma Survivor Blogs

These websites / blogs were active for some time but are inactive. Most explicitly state that they are inactive now due to the one with Glioblastoma passing on, but some seem to have just petered out. They all provide insight about their journey with this disease.

Ted Washburne

Amanda is the founder of Survival With Kids. She is the mother of 4 kids (two boys and two girls). She became a brain cancer widow in April of 2017 at the age of 32. She writes about surviving and preparing for unexpected events.

When my husband was first diagnosed, many people recommended a glioblastoma clinical trial at Duke University involving the polio vaccine. Unfortunately, upon further review, I determined that it wasn’t available to newly diagnosed glioblastoma patients. You can read more about our early treatment decisions here.

It hasn’t happened yet, but statistically my husband, Kraston, is getting close to having his first recurrence. If this happens, I want to be ready with our next move. I am strongly considering a glioblastoma clinical trial, but there are a lot of choices. Which is good for future glioblastoma patients and a future cure, but makes it tough to figure out what might be a good fit for us right now.

So this post explores the process that I am using to narrow down our options. If you are a glioblastoma patient or a fellow caregiver, you can use this process if you are searching for a glioblastoma clinical trial.

What Is The First Step?

Can You Narrow Down The Location?

Much of the research on glioblastoma seems to be happening on the coasts. So if you live on either coast, you will have a lot of great options without a huge travel time. Unfortunately, we live in Tulsa, Oklahoma making it somewhat onerous to travel to the trials in California, North Carolina or Massachusetts (those which seem to have gotten the most press this past year).

My husband and I have 4 kids under the age of 8, one of which is an infant, so traveling very far away for very long is unappealing. We don’t want to waste days traveling for a trial that could only add days to his overall survival. Depending on your situation, you may have a different tolerance for travel.

The Tulsa International Airport offers nonstop flights to 17 different cities in the US. So I went through that list of cities to eliminate those which involved more than 2 hours of travel time. I’ve narrowed it down to the following 5 cities which offer a glioblastoma clinical trial:

Dallas

70 minute nonstop flight

Denver

110 minute nonstop flight

Houston

90 minute nonstop flight

Oklahoma City

90 minute drive

St. Louis

70 minute nonstop flight

These cities span 4 states and the advanced search on ClinicalTrials.gov only allows you to include up to three different different states. I checked all of the studies available in Denver and they were also offered in one of the closer cities, so adding Missouri, Texas and Oklahoma as search criteria reduces the number of results to 43 studies.

Can You Narrow Down By Phase?

Clinical trials can be classified as one of 5 different phases. Only 4 of our 43 at this point are Phase 3. These are the studies that have shown promise in their phase 1 and phase 2 trials. In our opinion, the downside of a Phase 3 trial is that there are multiple arms to the study where some percentage of the participants don’t get the experimental drug, they just get standard treatment. If we are going to do the standard treatment, we’d rather just do it in Tulsa.

So I am going to reduce my search to just phase 1 or 2, giving 34 results. At this point, I have pretty well exhausted all of the online search modifications that I was sure about. Below is a summary of my final search criteria:

Glioblastoma

Recruiting

Interventional Studies

United States, Missouri

United States, Oklahoma

United States, Texas

34 years

Phase 1, 2

What is Next?

Now that I have reduced the list as best I can online, I downloaded a spreadsheet of the results to see how I can further reduce the list. When you download a spreadsheet, make sure you select all available fields so you get the most amount of information to analyze.

Looking at the information in the spreadsheet, I found one easy things to do a word find on. I am looking for clinical trials for after he has a recurrence, so I searched for “Newly Diagnosed” and eliminated those trials from my list. If you are looking for newly diagnosed trials, then you can search for “recurrent” and eliminate trials for which you would not yet qualify. Eliminating (4) “newly diagnosed” trials still leaves us with 30 options.

What Else Do You Look For?

This is where the process gets more personalized and subjective. I opened up each trial on the list and read through the information to find things which could eliminate a few more trials from my list. I edited the list down to 15 by looking for the following:

Locations that were not yet recruiting in my preferred cities, despite recruiting elsewhere. The online search tool doesn’t make this distinction.

Locations in Texas that weren’t in Dallas or Houston. There are a fair amount in San Antonio.

Trials that had an “active comparator” arm, similar to the phase 3 trials. If there is a chance that he would be randomized to just the standard treatment, we’d just rather not take the time away from the kids. Depending on your financial situation, you might be okay with the possibility of the standard treatment within a trial environment. Most trials pay for the majority of your treatment costs.

Studies with a maximum amount of dexamethasone less than Kraston’s occasional 4mg dose. If you are taking steriods, you will want to check the maximum amount allowed by the study.

Studies which say they are only to be used as a last resort. Several said to do the standard treatment first, so I’m guessing they are risky and probably not a great option yet. Kraston is still doing pretty well.

Researcher and Hospital reputation. I googled each of the hospitals and looked for their reviews as a cancer treatment facilities. Some trials list the primary investigator and you can google those names as well to read reviews of the researcher/doctors involved.

So Which Glioblastoma Clinical Trial Will You Do?

I can’t answer that yet. I have narrowed it down to 15 studies, reflecting the following 5 different researchers/hospitals:

University of Oklahoma, OKC

Texas Oncology (multiple locations in D/FW area)

Washington University (St. Louis)

Research Facility (St. Louis)

MD Anderson (Houston)

At this point, I have narrowed down the options far enough, that it is time to start reaching out and making contact with these organizations. Some of the trials have pretty length medical requirements that I am unable to determine for sure if my husband would be eligible.

Are you, or one of your loved ones, involved in a glioblastoma clinical trial? If so, leave a comment below with your experiences about how you/they decided which trial to participate in.

Amanda is the founder of Survival With Kids. She is the mother of 4 kids (two boys and two girls). She became a brain cancer widow in April of 2017 at the age of 32. She writes about surviving and preparing for unexpected events.

After Kraston was newly diagnosed, I spent the following 3 days (while he was still in the hospital recovering from his brain surgery) researching glioblastoma treatment options.

Clinical Trials

The very Sunday before his diagnosis, 60 Minutes aired a story about a promising glioblastoma treatment from Duke University involving the polio vaccine. Many people shared this information while we were in the hospital.

I discovered that this treatment was a phase 1 trial for recurrent glioblastoma. Phase 1 means the trial is new and experimental, testing for the optimal dose. Recurrent means the tumor has to have started growing again after treatment for a newly diagnosed tumor, meaning he did not (yet) qualify.

I did a little bit more research and compiled the following considerations:

There are many more clinical trials for recurrent glioblastoma than for newly diagnosed glioblastoma.

Most recurrent glioblastoma trials have the standard treatment as a prerequisite.

Some newly diagnosed trials included treatment that could exclude you from the more promising recurrent trials.

Most newly diagnosed trials included the standard treatment with simply an additional experimental drug added. Nothing overly groundbreaking jumped out during my research.

No trials were recruiting in Tulsa, meaning we would have to travel or live away from home for treatment.

Our 4th child was expected before he would finish radiation.

Taking these factors into account, we determined that we would complete the standard treatment with home town oncologists. If he had a recurrence, we could consider a recurrent clinical trial like the Duke polio vaccine trial at that time.

Standard Treatment

A radiation oncologist and a medical oncologist each visited us describing the current ‘gold standard’ glioblastoma treatment options. We did meet with another radiation oncologist for a second opinion, who basically proposed the same radiation treatment. So at that time, there were three components to this standard treatment:

Standard brain radiation therapy

Concurrent temozolomide

Adjuvant temozolomide

Brain radiation therapy

Radiation is measured in either a unit called a gray (Gy) or a unit called a millisievert (mSv). 1 gray (Gy) = 1000 millisievert (mSv). For reference, a chest X-ray is approximately 0.1 mSv.

Based on the size of his tumor, the standard is (33) treatments of 1.8 Gy fractions, for a total exposure of 59.4 Gy. So his radiation exposure would be approximately equivalent to 594,000 chest X-rays.

He would receive one treatment per weekday, so the 33 treatments would take him just shy of 7 calendar weeks to complete. The type of procedure was called intensity modulated radiation therapy (IMRT) and only took 10-15 per day.

The main side effect of the radiation was hair loss. His radiation oncologist recommended putting an ice pack on his head before and after the radiation in order to prevent permanent hair loss.

Concurrent Temozolomide

Starting the same day as the radiation, he would start taking an oral chemotherapy called temozolomide (TMZ) every single day until he stopped radiation. Since TMZ is a pill, he would get a prescription filled at a pharmacy and take the pill each night at home. He did not have to go anywhere for an infusion like most other chemotherapy.

The main side effect of TMZ is nausea. Kraston’s regimen to mitigate the nausea was the following:

One hour before bed, take 8mg of ondansetron (generic of Zofran, expensive anti-nausea drug developed primarily for chemo patients)

At bedtime, take his TMZ dose.

The next morning, take 10mg prochlorperazine (generic of Compazine, cheap older anti-nausea drug).

Adjuvant Temozolomide

One month after radiation ended, he would start adjuvant temozolomide. He got a new prescription for twice the original strength of the chemo pills. For 5 straight days each month, he would take this new dosage. He would do this for 6 months. The same regimen of anti-nausea medicines have worked for the increased dosage.

Novocure Optune

When Kraston was first diagnosed, the Novocure Optune had only recently received FDA approval for use by newly diagnosed glioblastoma patients. It was not until after he completed his radiation that the National Comprehensive Cancer Network (NCCN) announced their recommendation that the Novocure Optune device be added to the standard glioblastoma treatment options.

The optune device consists of 4 arrays hydrogelled to his head, with cords connecting to the device in his backpack. The device creates tumor treating electrical fields which confuse the cancer cells. They get so confused that they forget to reproduce and die off, reducing the total number of cancer cells.

There are only a few radiation oncologists who have trained with Novocure and are permitted to prescribe the Optune. Part of the reason we choose the radiation oncologist that we did was because he had this option available for Kraston.

The main side effect of this treatment is skin irritation. Kraston’s hasn’t been too bad.He has been able to maintain wearing the arrays approximatelt 90% of the time.

Newly Diagnosed Glioblastoma Treatment Options

So there you have the glioblastoma treatment options for a newly diagnosed patient. At the time of publication of this post, Kraston has completed radiation and concurrent TMZ, 5 of the 6 cycles of adjuvant TMZ and 3+ months of Optune treatment.

Since his is coming up on 6 months progression free survival after completion of radiation, he has responded well so far to the standard treatment.

Amanda is the founder of Survival With Kids. She is the mother of 4 kids (two boys and two girls). She became a brain cancer widow in April of 2017 at the age of 32. She writes about surviving and preparing for unexpected events.

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